NPR's Juana Summers talks with Jennifer Levine, author of the book Generation of caring about the estimated 10 million millennials working as family caregivers, often before they have fully formed their own lives.
JUANA SUMMERS, HOST:
Many people who suddenly become caregivers for a family member find it difficult to know where to start. This was definitely the case for me and my family. While it is rewarding to be able to care for a loved one, it can also be difficult to find community or know what resources are available to help. This is exactly what Jennifer Levine experienced when she became her father's caregiver. She told me that this was all new to her.
JENNIFER LEVINE: I've never even set foot in a nursing home before. At that time I was 32.
SUMMERS: About 10 million millennials are family caregivers, according to AARP. When Levine first came across this 2015 data, she was stunned.
LEVIN: I thought it was one in four of us. I know more than four people.
SUMMERS: So, after her father died, she started an online community aimed at millennials who are in charge of the process.
LEVIN: There's no reason why we have to go through this alone and try to reinvent the wheel every time.
SUMMERS: The community she founded is called The Caregiver Collective, and I wanted to find out what the members taught her.
LEVIN: So when, you know, you have an average idea of ​​who the caregiver is – a retiree, maybe – probably – a woman who's caring for an even more elderly parent – you know, they've already built their lives. And when you do it at a younger age, you think about how am I going to date if I'm also responsible for someone at home? How can I explain to someone what I do and that there is always a priority that usurps our plans? How can I have children? Can I afford this if I am a caregiver? Do I have time? How can I afford a wedding? There are many considerations that arise related to the age we are when we provide care.
And then there was the fact that many of us millennials came of age and entered the workforce during major economic downturns. And you know, we grew up in the gig economy, which was then exacerbated by COVID and unprecedented student loan debt. And when you add on top of that the cost of care, whether it's financial cost or time taken away from hourly wages, you know, it creates a whole other kind of economic disaster.
SUMMERS: From a practical standpoint, I think a lot of us millennials are in kind of a confused space of trying to make sure we're going to get through all of this, right? For example, if we have children, we must take care of our children and raise them well, and also make sure that the elderly person or you know, maybe even a spouse in our life needs care and they have needs that are often in demand. They can't wait. Do you have any advice for people who are in this space right now and trying to figure out how to make both things work – both types of care work – if you're part of this sandwich generation, for example, at the same time?
LEVIN: My advice to people who are faced with this conundrum: Use outsourcing by identifying people or people in your life who have the resources available to take some of the burden off your plate. What would you be comfortable giving to someone once or even regularly? Whether it's helping with babysitting so you can either drive someone to a doctor's appointment or even just go for a walk on your own. Who can help you drop off food or pick up groceries you can't get because your child is sick and you can't leave them alone with the person you care for? I also highly recommend rethinking the idea of ​​self-care. Self-care is sold to us like bath bombs or…
SUMMERS: So you don't mean face masks and manicures…
LEVIN: (Laughter).
SUMMERS: …What about pedicures?
LEVIN: That's nice, but no, that's not what I'm saying at all. When we talk about caregiving, stress levels are so high that it leads to negative coping mechanisms such as drug abuse, alcohol abuse and even suicidal thoughts. So self-care should be about truly taking care of yourself, whether that means seeking therapy, finding a community of other caregivers your age who can help you reflect on your experiences, and you can get advice from them. These are the things I emphasize when I talk about self-care, things that can help you create the tools to help you move into the future.
SUMMERS: We talked about your role in caring for your father, and I know that, like me, you are an only child. But many people I've talked to who take on a parenting role are trying to figure out how to do it, perhaps with a sibling who may or may not be as involved as they are. There may be differences of opinion. Talk a little bit about what you've learned about people navigating this part of the issue and what you might say to someone who is trying to navigate this when people can't all agree on what's best for their loved one.
LEVIN: I've seen it in two different forms among the people I've interviewed. First, there is a sibling missing and you have most or all of the responsibility for care, or siblings are present but it is a case of too many cooks in the kitchen – differing opinions. So, the advice I got from one caregiving expert I interviewed was that when you're faced with the idea that you're taking on more caregiving responsibilities than any of your siblings, really remember your value and value. Set boundaries and communicate openly, asking for what you need.
So it's much more difficult than it seems. I've heard of siblings asking for help and not getting it, so I say communicating and explicitly asking for what you need can break down some of those barriers if you explain, that's how it affects me when I do it all myself. Maybe it won't even break through the wall. Therefore, I was advised to use a third party as an intermediary. This could be a trusted family friend who can remain impartial. This could be a social worker from the hospital. This could be an elder care lawyer. But someone who can chime in on that conversation, because sometimes a sibling might hear you differently if they heard it from someone else.
SUMMERS: I think for a lot of us, it's a topic that we don't talk about or think about until we get into it and – but the truth is that most people in this country will need some form of long-term care at some point in their lives. So, I want to ask, Jennifer, how can a person who may not yet have become a guardian prepare for the financial consequences? Are there conversations they can or should have now with people in their lives, or financial steps they could take to be as prepared as possible, knowing that situations change and circumstances change?
LEVIN: I think financially it's very difficult to prepare for this because you have no idea what the needs are going to be. But I would say that it is incredibly important to have all your paperwork ready in advance. And that includes hiring an elder care attorney licensed in your state. Because every state is different and knowing what documents are helpful for us to have in place before something happens in case something happens? Do you know who is financially responsible? Is it anyone? Is there a living will? Are there medical wishes and are they clearly stated? Where would you like to live? How would you like to be cared for? All these pre-load conversations are incredibly helpful.
(SOUNDBITE OF MUSIC)
SUMMERS: We spoke with Jennifer Levine. She is the founder of The Caregiver Collective and the author of Generation Care: The New Culture Of Caregiving. Jennifer, thank you.
LEVIN: Thank you.
(SOUNDBITE OF MUSIC)
© 2025 NPR. All rights reserved. Visit our website terms of Use And permissions pages in www.npr.org for more information.
The accuracy and availability of NPR transcripts may vary. Transcript may be modified to correct errors or accommodate audio updates. Audio on npr.org may be edited after it is originally broadcast or published. The authoritative recording of NPR programs is the audio recording.
